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mummy2girls
Posted: Dec 14 2004, 08:23 PM
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Thinking of you Spencer!
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If you feel you need and want to share your story on how you lost your angel please post here. I will post my story later... sad.gif


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mummy2girls
Posted: Dec 15 2004, 11:39 AM
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Thinking of you Spencer!
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K this is my story...it may get long so bear with me:(

On June 27th 1999 I gave birth to a beautiful baby boy and what i thought to be healthy.I named his Jordan Michael Eli Talma-Weber. he was 7lbs 11oz 21.5 inches long. I brought him home the next day. At home that day and night he would not eat and didnt poop his meconium yet. So i took him into the emergency room. The ped on call looked at him and ordered tests and x-rays. That was so hard to watch. he was screaming so hard because of being tied down. After the xrays the ped told me that he has some kind of bowel blockadge and he would be transferred to the stollery childrens hospital. I didnt have a car at this time so i rode in the ambulance with jordan. Once there they had him hooked up to machines and iv's. and with help he pooped out 10 diapers full of meconium. It was awful. At this time it was 1 am so i had my mom come get me and I stayed at their place for the whole ordeal. The next day my mom came with me to the hospital; and she came to see Jordan. She then left and said she would be back later with dad when he gets off work. So i started to call everyone i could to update on his progress. everyday everyone from grandparents to uncles and aunts came to visit. I stayed at the hospital from 9am till midnight every day. he had a rectal biopsy done and barium enemas done to detect what he had. the results came back 2 days later. he had Hirschsprungs Disease. And for those of you that dont know what it is... It involves his gastro system. He was born without certain nerves to help in the process of him pooping. So he couldnt poop on his own at all. He was to have an operation at 6 weeks old when he gets bigger and stronger to have a pull through operation to hopefully cure him. He was in the NICU for 10 days then was released to go home. he was gaining his weight and breastfeeding and pooping with his irrigations. At home I had to give him his irrigations once a day. on the 3rd day home he woke up very lethargic and not eating. he wouldnt poop with his irrigation either. Then he started to vomit bile. So i took him back to the ER. They hooked him up to ivs and took some blood for tests. They transferred him to the peds ward. He was there and that when everything went down hill. The nurses that took care of him was to blame for his care and him getting sicker. Thats a long story and i posted that also in a diff thread. That night he started to get siezures. he would hold his breath for each episode and would go 2 minutes with out air. And the igniorant nurses just wouldnt let his doctor know that this was happening. because to them it wasnt siezures it was brady episodes. And when the doc saw him the next day he told them it was in fact seizures he was having so that nurse was let go! they took blood tests and it showed his disease got worse. he developed a infection that was spreading to his brain and blood. So he was transferred to the PICYU. And when they un wrapped him from his balnket to check his stats he had a 10 minute seizure. It was the worst one ever! He didnt hold his breath for that one but it still was devasting to his brain. He was put on a ventalator and on drugs to help his seizures subside and they did subside. But he was in a drug induced coma. They wanted his brain to heal and for the longest time he didnt sieze. He was hooked up to a machine that detected his brain activity. so they could tell if he siezed. And when he was first hooked up he had awesome activity happening. that night he started to go down hill. A surgeon came in to look at him and decided that they couldnt wait till he was stablized they had to operate to save his life. So he wa rushed in and had an illeostomy put in. he came out of surgery and was put back into his room. they had him drugged up so if he should wake up soon he wouldnt feel pain. I went to sleep in the mommy room they had at the hospital. I awoke and thinking that my baby would be awake when i see him. i went in and the look on the doctors faces was not good. he had wrnt into shock and lapsed into a coma. so at this point it wasnt looking good. so later that night the machine showed that he had almost no brain activity. you had to basically put your face up to the screen to see activity. So he was taken in for a cat scan. after the docotr had brought me in a room with a social worker so at this point i knew this wasnt good. Thats when he told me Jordan was going brain dead. he explained to me that he was getting put into a private room and the family will have 1 day and night with him before disconnecting him from life support. because at this pioint he was on life support. I was in shock. I was numb. I called everyone and told them and there was at least 2o people that stayed with him all day and night. That day i decided to baptise him. that was emotional! The doctors said that he will have to go through tests again to deternime he is actually barin dead. So they performed the test and on July 14th 1999 at 1235pm he was declared brain dead. Then i decided to donate his organs. I wanted to prevent a mom to go through what i was. So for 10 hours he was tested and his organs tested and finbding recepints. That night we found a baby boy that would get his heart and a lady to get his kidneys. they couldnt find anyone else to get the rest of his organs. So on july 15th 1999 he was taken into the or and is organs taken out. they then put him in a private room all bundled up and we all had a chance to hold him and say good bye to him one more time. So that was the hardest. he looked all peaceful laying in the bassinet. i held him and i knew that he was in heaven in no more pain. I had to walk out fo the hospital that day with no baby and thatw as the hardest time! He was layed to rest newxt to his cousin who also died as a baby 28 years ago.


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~Roo'sMama~
Posted: Dec 15 2004, 11:48 AM
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My two cuties :)
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bawling.gif bawling.gif I'm so sorry! What a terrible time that must have been for you. sad.gif I wish there were something more I could say but there just aren't any words. grouphug.gif grouphug.gif


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Sara ~ Wife to Scott, Mommy to Andrew 6-12-05, Alison 2-20-07, and our angel in heaven 4-20-06

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Mommy2BAK
Posted: Dec 15 2004, 03:01 PM
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Oh I am so sorry, that must be very hard for you. I wish I knew the right things to say to you right now, but I know there probally isn't anything that anyone could say to ease your pain. You are a wonderful person and mother. That was so curageous of you to donate his organs.


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~TAMARA~
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Josie83
Posted: Dec 16 2004, 04:15 AM
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Thank you Shelly anf Vig for sharing these stories . . . they're so heartbreaking. I can't even begin to imagine what you both must go through every day. You're always in my thoughts and prayers, and we're here for you ay time you need us xx
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MichaelsMommy
Posted: Dec 16 2004, 08:07 AM
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My heart goes out to you guys. I'm in tears from reading your
stories. I don't know how you got through, it takes a very strong
person to keep going after such trauma. I will keep your
angels in my prayers.


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kim62377
Posted: Feb 5 2005, 07:11 PM
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Jenna's Mommy and Loveydad - these are the only names I know to associate ya'll with. I just wanted to let you bothh know that your stories touched my heart and that my prayers are with you. I am a new member and I was just browsing the posts of all these wonderful parents (hopefully I will be one soon) and the posts of the both of you have tears rolling down my face as we speak. I am so very sorry - I do not mean to bring the anguish of grief to the surface again - I cannot imagine the strength it took you to survive this. It belittles my pain in comparison and brings me to the realization of how precious life is. I tend to be so jealous of my friends and families babies - it hurts to hold them, kiss them, love them. For some reason your stories have come to make me understand that ALL of our children are God's children and so precious to each and everyone of us. No matter if I never bear a child of my own maybe somehow all the love pent up will spill over to give that love where it may be so desperately needed. I am so, so very sorry for both of your losses - I realize my words are nothing. If I could give you both a big hug I would. I cannot tell you I know what you are going through - in no way can I empathize with your pain and grief - all I can offer you is my prayers and tell you how much you have helped me. I am 27 years old, married 1 and a half years and ttc all of it following an ectopic pregnancy. May God be with you both - I will keep you in my prayers... Kim


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0-10andbackagain
Posted: Mar 19 2005, 07:35 PM
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Im not good at sharing my story so it will be short.

Like Loveydad the day had a eiry feeling to it like something wasnt right. I was just 7 months preggo with a girl. I decided that I was goig to take a walk to the nieghbors. D@MN thing to do. So I walked down the driveway and started to have pain in my back. I ignored it. By the time I had gotten to the nieghbors I was having contrations. The nieghbors drove me to the ER where I delivered. She had severe problems(I dont want to talk about it) and died a couple hours after birth. I miss her so much and she will be forever with us. bawling.gif


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Mandasmomma
Posted: Mar 20 2005, 05:35 PM
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My daughter died during my sixth month of pregnancy - she was diagnosed with Downs during my pregnancy and also was found to have Endocardial Cushion Defect of the heart, which we were not told about until after she was burried. The doctor that performed the test on her heart inutero decided for us that we didnt need to know about it...we got the news in a letter mailed to our home on the day of Katelyns funeral.

Katelyn was born on May 25, 2001 on her Great Grandmothers birthday - I delivered her at only 3cm, she weighed 13 ounces - and was beautiful in every way - just too small to live in the outside world. She was burried with my father.

She became a big sister only 10 months later. biggrin.gif

This is the quick version of our story - someday I will get enough Kleenex to get it all out.


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mummy2girls
Posted: Mar 20 2005, 07:12 PM
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Thinking of you Spencer!
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QUOTE (Mandasmomma @ Mar 20 2005, 09:35 PM)
My daughter died during my sixth month of pregnancy - she was diagnosed with Downs during my pregnancy and also was found to have Endocardial Cushion Defect of the heart, which we were not told about until after she was burried. The doctor that performed the test on her heart inutero decided for us that we didnt need to know about it...we got the news in a letter mailed to our home on the day of Katelyns funeral.

Katelyn was born on May 25, 2001 on her Great Grandmothers birthday - I delivered her at only 3cm, she weighed 13 ounces - and was beautiful in every way - just too small to live in the outside world. She was burried with my father.

She became a big sister only 10 months later. biggrin.gif

This is the quick version of our story - someday I will get enough Kleenex to get it all out.

oh hun i am so sorry! (((HUGS)))) I know its hard to tell your story.... so just take your time and when your ready post...Ill be here if you need to vent!


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CAMSMOM1
Posted: Dec 17 2005, 10:08 PM
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The Cam Man is 2 yrs old
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It's taken my awhile to read posts on this board. Maybe because I was afraid to read the stories, and don't feel strong enough to do it. I just got up the courage to read your stories, and I am still crying. I can not even describe to you how much my heart is breaking for all of you. It pains me, even though I have never lost a child, just to hear your stories broke me. You all sound so strong, and I am proud that you are remembering your children, and their legacy lives on through your words. There lives made a big impact in our world, even if they were around for a brief time. Life wouldn't be the same without them. And I know they will always be with you, and now they are with me. I will think of them when I hold my son, and my prayers will be with you.
My Mom delievered a baby at 7 months old. He had down syndrome, and other problems. He didn't make it. It was her 3rd baby. My parents only wanted 3 children, and because they lost my brother, they decided to try again for a 3rd child. That's when my mother became pregnant with me! I know there is a reason for everything, and at first we don't realize why it's happening. But I thank God that he gave me a chance to be here. And even though I never knew my brother, I know that he is a part of me and why I am here. And I have a special place in my heart for him.
My deepest prayers and thoughts are with you. And I know that God is a good God, and he will hear your prayers and mend your pain. Cast all your cares to the Lord, for his yoke is easy and his burden is light. May he touch you lives today and strengthen you.
Ann


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1moremakes4
Posted: Jan 5 2006, 08:33 PM
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Wow! You are all so courageous to have made it through what you have and to be able to share it with others. Thank you for sharing your stories.


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luvmykids
Posted: Jan 6 2006, 08:21 PM
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I'm not sure why I was reading these posts since I haven't experienced your losses, but each of your stories touched me deeply. And if it helps in any way, you have each inspired me to try to be a better parent and hold dear even the roughest days. My prayers with you all and thank you for sharing.
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~~*Missi*~~
Posted: Jan 23 2006, 11:00 AM
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Hi. I have one dd who is 15m, she is the light of my life and without her somedays I wonder if I would get up. I became pregnant in July 2005, happily we were excited. Chris and I went to the doctors and saw the baby's heart beating we were so excited. It took fertility treatments and 2yrs to make sabrina (the 15m old) so we were thrilled that this baby was jsut a nice surprise with BF and all. I was told to quit Pumping (longstory of why i idd pumping and not Breast) but i did reluctantly. I saw the high rislk ob and saw the baby again. August 26th after seeing the baby on the 3rd we had a recheck and they couldn't find a HB with the doppler. I didn't think anything until they did an ultrasound and there was no flicker. I got scared and they sent me next door to have another U/s. Sure enough my little sprout and passed. There was no HB anymore. sometime between the 3rd and now the baby got called back to heaven. I naturally lost the baby, no D&C because of the possibly of scare tissue. So I waited and it finally happened over labor day weekend.
Chris and I went thru a rough patch about whether to try again or wait. So we said we would do what we did before leave it to god. We ended up pregnant again after my first cycle. I was shocked but not excited this time. Extremely scared. We went to the doctors to confirm around my bday. Not one baby but twins! We were really really shocked. They decided since I was preterm with Sabrina a previous mc that i would be watch even more. So i went like once a week. LOL. I saw the little beans bouncing and HB's. I started bleeding in dec. and things just detoriated from there. The bleeding stopped but the doc did some testing and there was some "abnormalities". Well they monitored me more and more. But come the new year I lost my precious babies again.
I am truly AFRAID to get pregnant again. I dont think i can go thru this anymore. Seeing them waiting for them and m/cing them. So we are being careful. We aren't on BC or using anything but we are definetly avoiding that "fertile" time of the month.
That is my story.....thanks for reading


This post has been edited by ~~*Missi*~~ on Jan 23 2006, 11:02 AM


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moped
Posted: Jan 23 2006, 11:31 AM
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Thanks for sharing Missi

It is so hard, but what is meant to be will be. I also have gone through M/c, and it is tough to deal with sometimes


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AnnMarie0204
Posted: Feb 8 2006, 11:06 AM
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I am new here. I wanted to share my Angel's story with you.
Mikey was a beautiful, smart and healthy 2 year old. At the beginning of 2005 everything changed. first Mikey started with a rash on his face. We went to see Mikey’s dr. he said it was fifth disease. We went back because Mikey was getting muscle weekness. He couldn’t sit on the floor to play with his toys or even go upstairs to see papa and nana. Which he always did. The dr. kept telling us it will go away. We went to another dr. they told us the same thing. I decided to go further and take him to the ER.

We got referred to a rheumatologist. We went a few days later and they told us that Mikey had a rare auto-immune disease called Dermatomyositis. When we were told this we were very upset. We had no idea what to expect. We told ourselves that we would get Mikey through this. They told us that we caught it early and that was really good. He will go into a remission is 2-3 years.

Then that’s when something went wrong. Mikey went into the hospital for 3 days to start his treatment (steroids and methotrexate). But during this time Mikey had possible pneumonia. The dr.’s weren’t sure so they treated it as pneumonia.

One month later on April,2 we were back in the hospital. Mikey was sick again. We told the dr. Mikey was sick 3 days before but he said he was fine. It took over a week to finally know what Mikey had. He had PCP pneumonia. No one expected that because they said usually only HIV patients get it.

At this point Mikey was in the ICU on a ventilator and in a drug induced coma. He was then put on ECMO because his lungs couldn’t handle the pressure of the ventilator any more. ECMO is a lung bypass machine. It would give Mikey’s lungs a chance to rest. About a week into being on ECMO we saw some improvements. We thought he was going to come off ECMO. But when it came time to wean him off, he couldn’t tolerate it. His lungs were just to sick.

We put him on the lung transplant list. It was a very tough decision to make. If he did get the transplant in time he could suffer a lot. Lung transplants are the most difficult to do. We decided to at least put him on the list, then we would see how things went.

Mikey’s condition started to get worse. He was already on ECMO for 40 days. That was the most any patient was ever on it. So, if anything came up they weren’t sure how to handle it. He was already starting to have some complications. We didn’t want anything to happen that could cause Mikey to suffer. We had to come to the decision to let him go. This is a decision that no one should ever have to make. We put it off for a few days. Finally that day came. I think that Mikey told us that it was time. He fought so hard the whole time, but his numbers were starting to drop. We called our family and friends to come and be with us. Mikey was with everyone that he loved. Later that night Mike and I were able to be alone with mikey. We talked to him and told him how much everyone loves him. I held him while the machines were turned down. Finally at 2:20 am on May 27 2005 Mikey passed away. The toughest part was feeling his heart beat that one last time. But I was glad we had those last couple of hours holding and talking to Mikey.
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Posted: Feb 22 2006, 06:38 AM
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Why does god call our little ones? I have asked myself that many times. Maybe it's a test of our faith, or he needed these perfect beings to help him set up his kingdom.
Everyones stories have touched me deeply on a personal level. Enough to tell my story ( which I do not talk about). I feel ashamed to do so.
I lost 2 pregancies in my early 20's. The first everything was going well. My boyfriend at the time seemed excited and wanted to get married. At about 16 weeks I started spotting, I freaked out and we went right to the ER. I was loosing my baby. I thought I had done something wrong.
Two years later, we became pregnant again. This time, our relationship was already on the rocks. The BF wanted me to terminate, but I didn't want to. I suspected that he wasn't being faithful and just wanted out. This pregnancy didn't feel right to me to begin with, but I was going to do whatever I had to do. Love and spoil that child till god calls me. Still something didn't feel right. I went to the OB at 10 weeks, and they did an ultrasound to check for viability. There was no baby. The Doc said it was a molar pregnancy.
I blamed myself for the longest time for my losses. Soon after the second pregnancy my partner and I went our seperate ways. Maybe it was just God's way of saying it wasn't right.
I felt a lot of guilt and shame for a long time. I decided that maybe I was never meant to have children. But then God blessed me with little Evelynn and a wonderful husband.
Thank you everyone for giving me the strength to get that out. It has weighed heavily on me for some time.
Love you all!


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WaitingForBaby
Posted: Jul 10 2006, 06:29 PM
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my story

My son Ashton Michael Cookson died on January 1, 2005. It was a shocking night. Ashton had a good day. He was full of smiles but tired a lot, he seemed to wake up a lot. I wish I knew what's wrong with my son before he went to the angels. You think to yourself a lot and saying what if. Jason and I decied to go out, with couple of friends. We ate dinner then went bowling then we went to the bar. I wish we would have went home because I know I had this worst feeling ever.

So it was around I think 2 am, my father called me and said, "Melissa you need to get home," and I was like, "Oh no Ashton's crying." So when we got there, wow a lot of cops maybe over 7 of them and a big white van and I saw my mom in tears and I was like, "My badass mom is crying", and I was like, "Oh no". When I went to go see my son, he was lying on the table, wrapped up. I didn't know what to think, I was scared. I lost someone I truly love with all my heart. So I sat down at the table and cried and prayed. Yes, I do hate God for this I really do but he's an angel and that's what God can do for me. I laid my head down next to him and said, "Ashton, I know you can't hear me, but this is mommy, I am so sorry I let you down, but I'm glad I saw you with a smile on your face and playing like a big boy. I love you so much Ashton, I will become strong for you in the future and make you a brother or sister. Someday mommy will meet you and we will be a family." Then I walked away so they could take him away.

I never felt lonely in my life. He made me strong to this day. I cry as often as I can but my strength is dying and I'm becoming weak. With doing the funeral there were over 100 people at his vistation. His own father showed up and he only saw him 3 times out of 5 months. I thought he and I were going to become really close and he was going to change, but Ashton didn't want me hurt, he always saw me happy.

To this day I think more of him each day, sometimes I think he's always lying next to me, I burn a candle in his memory every day and blow it out with a kiss with his pictures, he's my peanut and always will be.

You will always be in our hearts.


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withers
Posted: Oct 23 2006, 01:16 AM
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I've been touched by your stories. I don't know if you have heard our story yet so i will post what happened here.

When charlotte was born she seemed healthy according to the doctors. But i think she looked rather blue and sleepy, i told the OBGYN doc and nurse that was in there at the time and they just said it was normal.

We took her home and she caused heaps of trouble. She would sleep a lot during the day and be up all night, she would throw up a lot of her food, get lots of rashes on her face, have weird episodes where she would go blue really easily etc. We didnt kno what was happening and we knew something wasnt right but we were just passed off as 'Neurotic young parents who dont know how to care for a baby and are in shock that their baby doesnt sleep and is causing trouble' and that is actually a quote i read off one of the doctors letters to our GP.

Charlie had a very serious episode where she went to sleep and forgot to breath and she got really sick, then she just went really flat and we couldnt wake her up at all. We called an ambulance and they were really good, they said her heart rate was fairly irregular and they did the best to help her. They were the first people that listened to us!

Once we got to hospital, they asked all these insulting questions like 'did you smuther her or put a pillow over her face?' I was absoutely beside myself with those awful questions. I wonder if we had been older, whether they would of still asked them... i think it was extremely unfair.

They got a cardiologist to review her, and they did an echocardiogram. He diagnosed Septial Defect and she was rushed into surgery... it all happened to fast, but at least we had an answer to why she had been so sick.

We were absoutely beside ourselfs, Maddie blamed herself, i blamed myself, my parents blamed themselves - but in the end we just came to the conculsion that it was their fault for not listening to us and we were treated poorly because of our age.

She was diagnosed with wolf parkinson white syndrome and fallots trology later on, and she was extremely unwell. She went through 5 surgeries, each one of them gave us hope, but in the end they came to the conculsion that there was nothing more they could do for her, her heart just couldnt pump blood at all and it was too late for a transplant, and if she did have a heart transplant, she probably wouldnt survive for very long. By that stage she had also developed pneumonia, so she was just too sick and suffering a lot.

She died peacefully on the 30th of Aug, just 20 minutes after her ECMO life support system was turned off. We miss her very much. sad.gif

Thanks for reading about charlotte.
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